Saturday I had the privilege of seeing this movie with my friend Eliza. I was apprehensive about seeing this movie as I am with any gimpcentric film. The reason being is that often they are saccharine laden, ableist pieces of crap that only serve to perpetuate stigmas surrounding people with disabilities.

To my great surprise, I loved this movie. Although you could describe the theme of the movie as: religion and society as agents in the crippling of people with disabilities. And this is nothing I haven’t written about already. I often feel like a broken record on this blog. I know many may be confused as to how religion and society can cripple people who are already… crippled. Ha. Play on words. But it’s true. It’s an emotional crippling that happens to the person with the disability that often takes many years to recover from. Some never do.

Here is the heart of it. In church you often get the message that sex is sinful. That certain parts of your body need to be actively ignored and suppressed until you maybe find someone to go get a piece of paper to make it “ok in the eyes of God”. And there is a certain amount of shame and guilt associated with that. It’s in the language we are taught to use about our genitals. “Down there” for girls and “weewee” for boys. Over time this creates a disconnect with a very intimate part of ourselves. Say vulva/vagina/clitoris or penis and being ok with that (or being comfy in knowing how those parts of our bodies work) is wrong and sinful. Such proclivities do not exist for hands and feet, yet they too belong to the same body. So you have a whole set of people who do not understand their own anatomy, how they function, how it feels. Stemming from that is this crazy heterosexual expectation that men should know exactly how to please women. How is that even possible if women themselves do not know what pleases them? Especially when a lot of women don’t even know what their own vulva looks like! There is a reason why that scene with Kathy Bates in Fried Green Tomatoes is funny.

Also, many who are religious have this belief that one is disabled due to sin (either sin from your parents so your disability is God’s punishment, or your own sin that you are being punished for) and only by beseeching Jesus will you be rid of your disability. And if your disability persists then it is proof positive of your lack of faith. This has led to many people with disabilities throughout the world being put into institutions, or hidden away in the family home and not spoken to or given an education. I have heard stories from friends who have seen people falling out of their chairs onto the steps of churches and crying and begging to God for mercy and to heal them. Nor is it uncommon for people with disabilities to be stopped randomly and told, “I will pray for you” or have the healing prayer session happen right there in public. In my own experience, my mom and her husband once took me to a church they were attending. It was the old Baptist kind where, for some reason, the pastor and his wife sit on throne like chairs afterwards as the congregation goes up to say hi. It was our turn so the pastor looks at me, looks at my mom and shouts while pointing at me “is this permanent?” and my mom meekly responded with “No, she’ll be healed by the blood.” At the same time her husband is shouting at the pastor “She don’t believe! She’s not a Christian!” and no one at this point had even bothered to ask my opinion. Clearly, disability is so bad I needed an intervention from God. I was the one with the wrong idea. I don’t need adherence to the ADA, I just needed to fix myself through prayer and life would be all coming up roses. What I really needed was an intervention from being surrounded by idiots. My prayers went unanswered. It was my mom’s husband who told me on many occasions when I first began to experience chronic pain, that the reason I was so ill was because I did not believe in Jesus. Imagine that being the record that played through your whole life, the result is the creation of a whole shame of the self comes into play for people with disabilities.

How does society play into this? I’ve spoken before about barriers. But all these barriers stem from one thing: a barrier in attitude. I was at a great conference this summer coordinated by Alex Wegman. The keynote speaker hit the nail on the head when she said that you cannot legislate attitude. If the attitude of the majority of Americans was that people with disabilities should have barrier free access in every part of their lives/are equal members of society, then homes would not be built with stairs leading up the front door, all businesses would have automatic doors, all apartment buildings would have elevator access to all floors, employers would employ us more, we wouldn’t have to fight to get the mobility devices we need, we’d be spoken to directly when ordering in a restaurant, no one would exclaim how “brave” someone is for dating/marrying/having kids with someone who is disabled, things such as “dwarf tossing” would not exist and Republicans would not block the ratification of the Convention on the Rights of Persons with Disabilities. Just to name a few pet peeves.

We are not seen as desirable and sexy. We do not fit into what is “normal”. I agree with Facebook, normal is just a setting on the dryer and yet everyday there is societal pressure to conform. Oftentimes our perception of our bodies is regulated to the clinical. I knew what my vulva looked like as a kid because I needed to use mirrors to find my urethra and stick a catheter in it to urinate. I found it gross. Adults with SCI find it gross. And somehow you’re supposed to overcome that type of barrier, along with the barriers of society and religion to become a fully realized, sexual adult. Too often, people with disabilities get left behind with that. Many lack access to sex ed, or even know options for birth control. Doctors are often reluctant to speak about sex with their disabled patients. Even finding a date when you’re disabled is a hassle. Nor are people with disabilities encouraged to explore their sexuality. Too often we’re seen as asexual creatures. Too many times I have been asked by men/random people if I am capable of having sex. The other assumption is that just because I use a wheelchair, means I cannot get/be pregnant. Last I checked, my uterus did not go flying out of the car when I was injured. The main attitude is that if you’re disabled, you cannot have sex. And the attitude towards sex is limited to the orgasm and genitalia (insert part a into part b. yawnfest), when it really is an exploration of your own body and that of your partner and the mutual pleasure that comes from that exploration. This is what The Sessions is about and portrays wonderfully. It is not about the act of sex, but a man’s journey to overcome the baggage that religious and societal attitudes gave him and finally understanding and seeing himself as he really is. And it’s an announcement to the world with frankness and humor that people with disabilities are just that. People.

Even though the RocCity Coalition has announced its new initiative for the upcoming year, we’re still dedicated to the mission of trying to improve education in our city schools and continuing the PENCIL partnership with School 5, so there are many opportunities to get involved! Healthy children, means healthy minds that are better equipped for learning.

One such opportunity is becoming a volunteer for Junior Achievement’s JA In A Day program for the sixth graders at School 5. The program engages students in learning about their role and connectedness to the global economy and that they are a part of a much larger global community.

As a volunteer, you get to interact with students and teachers and all materials for the program are provided already by Junior Achievement. The theme for this year is called JA Global Marketplace and has activities such as a scavenger hunt to find objects that were made over the world, learning about trade barriers and how to settle a trade dispute as well as students understanding how to open up a restaurant in a foreign country.

Program Manager Karyn Rittenhouse feels that Junior Achievement’s JA In A Day is a great fit for the Coalition due to our mission of “looking for new ways to encourage students to work hard and open their horizons” and this program is another outlet to get involved.

The program will be held on June 1st from 9:30am – 3pm and there are six lessons lasting around 45 minutes each during the students’ normal class time.

If you’d like to get involved, please contact Karyn: karyn@jarochny.org for more information.

As a kid my father gave me a book that was sure to be one of my favorites: Another Fine Myth by Robert Asprin. A great fantasy novel of a wannabe thief named Skeeve and his adventures in mediocrity and a rise to greatness. I fell in love with it. The characters are just an oddball rag tag group. Each book in the Myth series has the word myth in it. I just felt it apropos seeing as the news has been riddled with mythperceptions of people with disabilities as of late.

Recently, Rosie O’Donnell made some extremely uncouth and ignorant remarks about little people. She proclaimed she had a slight phobia of them and for some reason the movie The Wizard of Oz was to blame for this. To add further insult to injury her guest said that having sex with a little person was tantamount to child abuse.

It is comments like this, which are truly rooted in nothing but ignorance, which adds to the unconnectedness of people with disabilities. A recent video meme has been floating around the interwebs in the vein of Sh*t <insert group of people here> Say. Sh*t <insert group of people here> Say. There is thepeople with disabilities version as well. It is on the nose about the types of comments many people with disabilities hear on a daily basis. Although I’d like to add the Rochester version of “Hey! You should put a plow on that thing!” If I had a nickel for every time I heard that, I’d be rich.

At last year’s Fairport Canal Days, I was with my youngest brother just hanging out and enjoying time with him. I noticed he was getting upset so I asked what was wrong. Now mind you he was 8 at the time and he stopped dead in the middle of the street and said:

“People keep staring at us.”

“Are you sure it isn’t because you stopped suddenly in the middle of the road?”

“Yeeeeeeeesssss.”

“Alright, so why do you think people would stare at us?” (at this point he continued moving)

“Cuz… you’re in a wheelchair. But don’t they know it’s NOT POLITE TO STARE.”

That last bit was directed at some little girl that had indeed been staring. She quickly ran off and I gave my brother a hug and an ice cream. He later informed me that he didn’t like girls but since I am his big sister, I’m oh kay in his book. Priorities.

An eight year old child seems to understand that concept so clearly, and yet people do it all the time.

Time after time in conversations, when disability rights advocates speak, in my own thoughts when some stranger wants to ask me some random and really rude question and what Stephanie Woodward also eloquently spoke about on Friday at RIT at a disability awareness dinner* is the bigger question of: what other class of citizens gets this kind of treatment?

And the answer is, none. We don’t go up to Asian people and say “Hey, are you good at math? Mind tutoring my kid?” Nor would anyone even think of asking a stranger about whether they can feel their genitals and are they capable of having sex.

Yet somehow that is all right to do to people in the disability community.

These societal attitudes have negative effects not only people with disabilities but drive decisions when it comes to healthcare and other forms of policy. In the next couple of blog posts I’ll be addressing specifically what those areas are and how the detrimental to full inclusion of those with disabilities into society.

I’ll end with one last story. I was in Wegmans a few weeks back and this cute toddler kept staring at my chair (kids really dig my light up wheels.). I smiled at her and was waiting for the pharmacy tech when her mother noticed her child staring. She knelt down and said “That’s called a wheelchair. It helps her get around fast just like your legs help you get around. Isn’t that cool?”

Indeed, I think my chair is very cool.*Stephanie Woodward gave a fantastic talk on Friday at RIT for a disability awareness dinner. Some of the wording was similar to her speech. Any semblance to plagiarism is unacceptable and I am sorry that I was not more diligent in editing and giving credit to Stephanie.

So, I’m not a huge fan of Christmas but there are two shining lights that always brighten my mood during this time of year: my younger brother Laurence (born a week shy of Christmas) and the Rochester Philharmonic Orchestra.

Now, clearly my little brother is awesome. We stuck him under the Christmas tree in a onesie that read “Don’t open ’til Xmas” with all the presents. Looking at him now, it’s hard to believe he is a teen and no longer that tiny baby but a very funny, introspective young man. One that will surely groan, like teens do, when he finds out I put that story in print.

Obviously the second is that of the RPO. I come from a very musical family on my father’s side. My dad could sing extremely well and many of my cousins are just… woa. Super talented singers. I, however, am not that gifted, haha. So to all the YPs going to the after party, I apologize in advance. Bring ear plugs.

In 9th grade I heard of the Gala Holiday Pops from my choir teacher, Mr Arnold. I begged my parents to let me do it. While it was quite the undertaking–just a few rehearsals to memorize the music–it was definitely the highlight for me for Christmas. It wasn’t Christmas without the RPO. And quite frankly, even if I leave Rochester, I’d still come back here to be there for the Pops.

That first rehearsal with the RPO was awesome. There was an excited nervous energy . Then in came Mr. Tyzik with his poofy hair (my teen brain did the equivalent of a 404 error code) and he just smiled at us, gave some encouraging words and we began to sing. His energy was infectious and it was just a boatload of fun. And that’s why I liked Mr Tyzik. You kind of expect a conductor to be like the Bugs Bunny sketch; all serious and severe. But with him, it was fun, and you wanted to do well and he brought out the best in the choir.

For me, the best part was the actual concerts. I couldn’t be where the other students were, so I got to sit backstage! I’d decorate my chair with lights and laugh at the goofy Christmas themed socks Mr Tyzik wore. One year I asked for an autograph for my mom because I was too lame to ask for one for myself. The whole time was just a rush of exhilaration that suddenly was over as quickly as it started. And I couldn’t wait until the next year to do it again.

Now, Christmas doesn’t start until I hear Wegmans play the RPO music.

So, now you know a bit of my holiday traditions and I encourage everyone to make the RPO a part of theirs(if you haven’t already). Even though Mr Tyzik and I have a lot less hair now than we did back then the core of the Pops hasn’t changed; it’s still a fantastic time, it’s still about family and the music is fun and you get to rock out to Handel’s Hallelujah chorus. Bring the kids, wear an awesomely ugly Christmas sweater and ENJOY!

It’s been over a month since I’ve been volunteering in Mr. Gallagher’s science classroom. Like all kids their age, when they are having a really good day, it’s a really good day. When they are having a bad day, their internal frustration is palpable. Personally, that breaks my heart and I feel helpless in those situations. The only thing we can do is to make school a fun place to be; a safe haven.

And Mr. Gallagher’s class is definitely a fun place to be! From trying to teach them inference skills by using a pie graph entitled “Likely Outcomes of Using a Real Lightsaber” to having them create posters on different scientists instead of having them sit and copy notes from the slides.

The poster presentations were awesome. It was great seeing the kids drawing (some talented artists!) and some groups finished early. Two boys struck up a conversation with me when Mr. Gallagher said that they’d be looking at the bacterial slides I brought in for them. One boy was all “Bacteria?! Eeww!” and thus began some rapid fire questions about bacteria and parasites. So I sat with him and his group partner and just talked about why bacteria in fact are beneficial and that no, they do not feed pigs worms which then make you sick. The other boy then quietly said that he wants to study ornithology when he grows up and asked questions about the field and do I know any ornithologists.

It was a great moment because it was the first time the students have opened up to me and started asking questions.

Friday, Mr. Gallagher told me that he was going to teach his favorite unit: microscopy. And it wasn’t hard to see why it’s his favorite. The collective squeals of delight and the excited chatter when the students first put their microscopes into focus was truly amazing. Seeing them excitedly going to each others’ microscopes and going “Ewww! What’s that?!” and congregating around the scope with the ant slide (the most popular) was absolutely hysterical. They all had HUGE smiles on their faces. That’s what science does for me and it’s so cool to see them be excited as well.

I love volunteering at School 5. Each time I come in they greet me with smiles and “Hi Miss!!!” We still have a long way to go with these kids, but hopefully we’re laying the first bricks to a solid foundation for them.

This past Tuesday I attended the Open House at John Williams School 5 and it was an amazing event with a huge parent turnout.Every time I go there I am reminded of why this school was chosen: it is a vibrant school that is enjoyable for the kids as well as visitors.They are parent friendly, even allotting a special room just for parents.Joanne Wideman is an energetic and involved principal and the teachers are invested in these kids. School 5 does defy those negative stereotypes often associated with our inner city schools.I truly believe we can change things around, but as always, we need community support.

When I arrived, I was surprised to see that there were organizations there that had set up tables for the parents.These organizations ranged from Volunteers of America to Iglesia Educational Centers.As the lead on this Education Initiative, I understand that coming to the school during the day when the children are there is tough.I get it, as professionals we have jobs, personal lives, what have you, so I collected fliers and direct contact info from as many of the vendors as possible and they do accept volunteers.

My wish would be for every person that came to RocCity Rising could commit to at least one hour per week of volunteering/mentoring/etc for not only School 5 but for other city schools for the rest of this school year.My bigger goal is that we continue to commit until at least these 7th graders reach high school graduation and until we see a change in our city school graduation rates for the better.The great thing is, it works; community-based child rearing works.

And just like when you skip a stone across water, the resulting ripples are far reaching.Just imagine the lasting effects when multiple stones are skipped across that same pool. The possibilities are numerous and compounding.

It’s been awhile since I’ve blogged.But for good reason; I’ve been busy.And the reason is I’ve been busy with Ms. Wheelchair America/New York (yay second runner up in the national pageant!), Rochester Young Professionals with Disabilities and now the lead on the Education Initiative Team for the RocCity Coalition and my research projects at RIT.All of these activities have one bond in common: education.

As I’ve previously written, education was a cornerstone in my life early on. That foundation of a hunger for learning has proved to be my saving grace many times over.

I came to Rochester from California with my family when I was 10 years old.Needless to say it was quite the adjustment.Once we moved into our home on Bucklebury Hill in Fairport there was a sense of hope and a new beginning but little did I know it’d be a nightmare for me.

Somewhere around 6th grade, my father began molesting me.I was also trapped as our home was not accessible at the time (a ramp was placed in years later thanks to the Lion’s Club) and school was a bore.Due to having an IEP I wasn’t placed in higher level classes and so was just definitely not interested in how to balance a checkbook in math. Also my apologies to Mrs. Matrese for saving my teeth in ziplock baggies on my desk. It shows you how uninterested I was back then in life. I’m not really sorry for my desk being messy as it’s still a mess to this day.But it was in 6th grade that I met my best friend and best of all, my father was not at school.I was safe.

Coming home was tough.My brain injury caused me to have severe insomnia and I’d often be awake until late reading and this was when my father would molest me and I quickly spiraled into depression.

It was in 7th grade that my life changed.My math teacher recognized I was catching on quickly. We’d sometimes talk about math before class and he often prompted me to think of my future involving math.It was required that I went to resource room but honestly, that was naptime. I didn’t want to be there, nor did I feel I needed to be there and be told to do my homework.I think it was in high school where a sub resource teacher asked me to do my work.I responded that I had done it already.She didn’t believe me and demanded to know when I had completed the work as she’d only seen me sleeping.I looked up and said, “I did it at home.That’s why it’s called homework.” 9th grade was fun in that my resource teacher told me “You don’t need me.” And I was able to go into honor’s English.

At FHS I was able to take honors and AP classes.My teachers and friends and little brothers were my lifeline. Daily I contemplated suicide as I never knew when I was going to be molested.But there was always school where a teacher recommended an author/talked about a favorite subject, or laughing until I cried and my jaws hurt with my friends at lunch.There were rants about why we hated “Cold Sassy Tree”, “The Pearl” and that damn tortoise in “Grapes of Wrath” and hating Nathaniel Hawthorne (OK, I still hate Hawthorne); gushing over Shakespeare (I was happy Romeo and Juliet died as I found them insufferable) and so much more.

That was my anchor, and even more so when I was 16 and my father decided he was going to rape me.We had just celebrated my brother Laurence’s 3rd birthday when it happened.I called the police because I was fed up.I felt as if I was living a lie and was tired of the torment and pain and constant agony. That day also happened to be the day I had a rehearsal with the RPO for the Holiday Pops concert.We came home from the police and the hospital, I took a nap and told my mom to not let me miss choir practice.It was the first time that it ever registered with me the joy that is in Handel’s Hallelujah chorus. And when I accepted Mr Tyzik for being… well… Mr Tyzik. Light up Christmas socks and all (he had hair back then).

The price of my freedom was that my mother then had to go to work after not having worked for years as she was a full time stay at home mother.She tried going back to school and she also began dating.So there was no one home in the evenings while she worked/went to school/dated.I cooked, cleaned, fed my little brothers and got them ready for bed or helped the one with his homework. I was taking AP courses so I’d end up falling asleep on the floor with my face in my textbook, then waking up at 4:30am to start all over again.My mom’s boyfriend (now husband and he is the father of my awesome 8yr old little brother) upon first meeting called me lazy and disrespectful and throughout the years would tell me I was worthless and nothing because I wasn’t a Christian like him.

So I hid in my books.They were my ticket to an outside world where I could finally live life on my own terms. It was there that my love for science grew as in it there was no judgement and not knowing was a great thing. There was opportunity for discovery and that someone like me could be a part of it and the opportunity for constant learning.And my teachers, coach Joann Armstrong, my little brothers and my friends were the ones who kept me going when I thought I had nothing left.

This is why I am Ms. Wheelchair New York, why I co-founded/co-president of Rochester Young Professionals with Disabilities and am lead on this Education Initiative for the Coalition.I believe in the power of community and a quality education as that is what got me here today.

But as a nation, we’ve forgotten the meaning of the phrase “it takes a village to raise a child.”So when I hear people blaming it on the so called dissolution of marriage and traditional family and oh inner city parents don’t care about their kids, I get angry. I know that those parents care.In the case of school 5 where they are refugees from other countries coming to America for the dream of a better life for none other than who? The family dog? No. Their kids.I posited this very question to someone the other night: how do you expect poor parents to help their kids with homework if they are working several jobs and have minimal education themselves? Or cannot speak English.Or how on earth do we expect the children to succeed on a standardized test if they only know minimal English.

The so-called haves give the have-nots a fixed deck and then wonder why they can’t play the game. And when there is nothing but negative attention on our schools it only hurts one group and one group only: the children. It also fuels the attitude that the problem is too large or complicated to fix.

It is easy to blame everyone except for ourselves.And I know taking accountability for one’s actions or inactions is tough. We have a culture that’d rather throw money at a problem or hey let’s buy a t-shirt for X cause and you’ve done your good deed for the day. Or, as in the case with education, we blame the parents or the government/school system when in reality there is enough blame to go around; from government/school administration’s inattentiveness down to the people’s inability to get together as a united front for change.The low graduation rates and sub-par grade scores are a cry for help from our kids.And there are organizations ready and willing to help but they need you.When I hear that there aren’t enough resources to help I say bullshit.We got ourselves here and we have the resources and capability to get ourselves out.The two biggest resources are time and energy (I do not include money as the money is there but it’s more of a question of whether it is being used effectively and that answer is no). There are enough folks in Rochester to help our kids succeed.And there needs to be a cultural shift backwards to the times where our country understood that in order for our country to succeed and grow, it wasn’t dependent solely on one person’s back, but on our neighbors’ as well.

This is why the RocCity Coalition has this education initiative: to connect the parts of our community together into a network of support for our children.The hope is that this is a lasting effect, to start a movement of change so that we can build success upon the ashes of seeming despair.

So, to take a break from the hard facts of living with a disability and societal perceptions that make living that life more difficult, I’m going to share one of my true loves in life: science.

Whether you choose to accept it or not, science is everywhere.Heck, you can’t breathe without a reaction happening inside your body.But despite it being so ubiquitous, people often find it daunting; impossible at times to comprehend.However, it’s fun when you consider things in your world from a scientific perspective.

Recently, I have become slightly obsessed with nail polish.Ever since the Ms Wheelchair NY 2011 pageant (or did it start when I bought those urease pink shoes??) I’ve gotten more girly.

I have always been tomboyish. As a kid I resented being told that all girls like pink (I didn’t), should play with dolls (I wanted my older brother’s trucks.) and their only concerns were to plan their future weddings to so called “Prince Charming” and play dress up all day long (I planned my Nobel Prize speech and played neurosurgeon on my Barbies. I swore I was the first kid to do a successful head transplant on Barbies without the neck breaking or the ball getting stuck in her head).

I still see this today with horrendous shows like Toddlers and Tiaras, the dumb sweet 16 show on MTV and the list goes on. There is nothing wrong with being those things, but when we limit our young girls to just being princesses and daddy’s little girl, is it any wonder that there is a claim of low representation of women in science and the advent of the bridezilla?

But I am sure you’re asking, “What does this have to do with science?”

So, there is a technique I stumbled upon, where you add drops of nail polish into water.You can leave it as is and dip your nail in to make stripes, or you can do swirls and then dip your nail in.While messy, it gives a way cool effect and it’s fun to play with different designs and color combinations.

The final result with some glitter added. Very Lisa Frank!

The technique works because of the chemical properties of the nail polish and water.The water is a polar substance.This means that due to the greedy oxygen (this means it’s highly electronegative) it pulls electrons from the hydrogens towards its side of the molecule, or pole.The polish, is non-polar.This means that it’s made up of chemicals that have their electrons equally distributed over the entire molecule.While it may contain water, the resulting compound is non-polar, which is why it won’t mix (the same is the reason why oil and water don’t mix).

Colors I used were all Sally Hansen Xtreme Wear. From left to right: Fuschia Power, Deep Purple and Blue Me Away! (no joke, the exclamation is included. Very punny)

Nail polish also seems to be less dense than water, so it floats on the top of the water and actually forms a film if you let the polish sit for too long. The colors I chose also reminded me of Lisa Frank (aka teh awesome from the 80s and early 90s) so I added the glitter. I also cannot go a day without having glitter or sequins somewhere on my person.

As you can see, even the most mundane and girliest of things to do include science. You don’t have to be an uber nerd to get out and explore some of the basics. Yes science is daunting, even for those who practice it, but don’t let intimidation get in the way of exploration! And the next time you’re painting your nails with your daughter or niece or whomever, you can talk about the science behind the beauty and maybe instill in her the desire to be an explorer of the world around her.

I just wanted to thank all of those who have helped get the Rochester Young Professionals with Disabilities up and running. The first gathering of our group occurred and it was just a wonderful moment! A huge thank you to the Roc City Coalition for their support and helping me connect to get this blog and for passing the word along about this new yp group. Also to all my friends in the gimp community (you know who you are!) as well as my family and friends who are supporting this effort.

This is what makes the Roc great! The opportunities for philanthropy are numerous so if you’re wanting to, then get involved! Visit the Coalition’s website, or join a Rotary club or become a mentor to help with the Coalition’s mission or join habitat for humanity. There is something for everyone here and I hope that Rochester Young Professionals with Disabilities will be an inspiration for others. At the heart is collaboration and that the able bodied and people with disabilities can work together to make a difference. And it happened because a group of folks all had the same vision and worked hard to make it come to fruition. Catalysts, all of them!

So on behalf of Rochester Young Professionals with Disabilities thank you once again and I look forward to all the opportunities that will come.

So summer is finally here and hopefully the good weather will continue.With that comes more opportunities to go outside.I welcome the warm weather, even if it does rain. Unhampered by the snow, I can go out to restaurants, decks, parks etc provided it’s not too soggy! But the social isolation feeling still lingers. In the colder months I feel the isolation more.It’s not just the difficulty of getting through the snow but also the fact that it’s difficult, and dangerous, to carry a wheelchair up and down icy, snowy stairs/steps.

Social isolation is a major issue for the disabled community.It can lead to depression and loneliness.On one of the forums I belong to a woman commented on how little they can see friends since her husband became a high level quadriplegic and needed a power chair.They’ve lost friendships not because people don’t like them anymore but just for the fact they cannot get into their friends’ homes.And so, people do not invite them over anymore.In turn, the couple doesn’t feel like taking the step to invite them over to their place, or the expensive choice of always going out to eat as that lonely depression is exacerbated by seeing friends.I understand this 100%.There are friends’ apartments/homes that I have never seen, nor will I probably ever see.And so there is this constant palpitation of loneliness in my everyday life.It’s another example of how my environment can be so disabling. School has been a great equalizer as with my fraternity we are always doing things together but man what about just showing up to a friend’s house just to say hi?Or late night fun watching movies.

Lack of access to friends’ homes doesn’t just affect the person with a disability, but their social circle as well.Some friends of mine were looking for apartments and were hard pressed to find one that I could visit easily.Should they feel like terrible people because they couldn’t find a place that their friend in a wheelchair could get into?One of my dearest friends is pregnant and her apartment is up some very steep flight of stairs.I often worry how I will be able to see her baby and feel a tinge of jealousy that others can come into her home so freely to see her, and I cannot.Now I will probably end up crawling up those stairs myself to see little Seedling (it’s my nickname for the baby) but I honestly shouldn’t have to pull Rambo-like moves in order to see my friends.

Even just writing this article I can feel the depression and sadness inside.Everyday it’s something, another silent message stating I am worthless.And that message can eat away at you.It’s something of a very hard, bitter pill that I learned to swallow with ease growing up every time I went to school and heard my friends retell their adventures at so-and-so’s house reinforced that lonely feeling.I couldn’t be in on the fun, because I couldn’t get into that friend’s house anyway.It makes people with disabilities feel like they are a burden and inconvenience to their loved ones even if the loved ones do not mind helping.It’s the lack of being able to come and go and do for yourself, to be included.It’s a disconcerting feeling to feel an outsider amongst those you are so very close to.The freedom to come and go as one pleases was something that I craved like a thirsty man craves for water; I still do not have that freedom, not 100%.

Such a simple thing, when you look at it.Being invited to a friend’s home and sharing memories and food and getting that human interaction is good for the soul.So good that it is celebrated in cultures all over the world for thousands of years, most likely more.Still today, it is seen as a snub when someone doesn’t invite you to the party and yet, the world feels it’s ok to snub a whole group of people by building in a manner which does not allow them to participate in social home gatherings even if they wanted to.

The majority of the readers may know what it’s like to be uninvited and then hear about the party later or to hear of people talk about a coming up event and going “Oh!Who should we invite?” and as they list everyone they know, except you.Now take that hurt and each time you see stairs to a house/apartment entrance, or any accessibility violation and multiply by two.Then you may come close to how that feels to someone with a disability.But it’s not like we’re all just big gaping wounds crying about our lives all the time, especially not me.A weird coping mechanism happens when you have to ignore parts of your environment.Dr. Rhoda Olkin, a distinguished professor at the California School of Professional Psychology and Executive Director of the Institute on Disability and Health Psychologyand who also has polio,spoke about this in an interview.

The article partly explains the funk I’ve been in since I began writing this.Before I came to Rochester I really had close to zero social interaction outside of my family.I was trapped not only by lack of accessibility laws, but also due to not being able to get into others’ homes and not being able to do my own personal care. I didn’t have friends to speak of.I spent a lot of time, as I mentioned, reading.It’s made me very socially awkward with tinges of social anxiety sometimes bordering on panic/anxiety attacks, for huge social events.But with the interactions of friends after coming here, and just because of life in general, I have acquired the skill of ignoring the parts of my environment that are aggravating and hurtful.I have had to develop the mental toughness that has empowered me to climb up stairs to visit people, to get up and face my reality with no reservations or anger. This is what my life is; I will make the best of it.And I have been grateful to have an army of friends who are willing to help me live life to the fullest and share in life’s joys and sorrows.So, over time, I just don’t dwell on the hard things.I adapt, be as flexible as I can and just go on with life. This is not something I was taught to do but what’s the alternative? Being depressed all the time? Hating myself?Sadly, many, especially in the world of SCI, are plagued by depression and self-loathing. People blame themselves, are angry, depressed.Sadly, for a time, I was once one of them.

What I am really talking about here is not just social isolation.Social isolation is one result of what I’d like to call the Trifecta of BS that many people with disabilities have to deal with: Social Security/Healthcare, Transportation and Housing (or should I call it the Quadrilateral of Aggravation?).The two easiest to solve are transportation and housing. But lets focus on the housing. Over the years some design ideas have come about to help solve this issue: universal design and “visitability” aka Inclusive Home Design are just two examples. I am sure you’re asking what those are, and luckily, we need not look further than our own backdoor to our friends at the University at Buffalo for the answers to these questions.

UB has a nationally renowned Center for Inclusive Design and Environmental Accessand you can visit their page on visitabilityto find out more about their projects. They describe visitability as “an affordable, sustainable and inclusive design approach for integrating basic accessibility features into all newly built homes and housing … based on the conviction that inclusion of basic architectural access features in all new homes is a civil and human right and improves livability for all.” The handy booklet which outlines the guidelines is broken down into three conditions: one zero-step entrance at the front, side or rear of the home; 32in wide clearances at doorways and hallways with at least 36 inches of clear width; and, at least an accessible half bath on the main floor.We can say that visitability is a subset of universal design.Universal design is all about the broader view in making products and environments easy to use for ALL people.It does have some standards that include flexibility in use, low physical effort and simple and intuitive designs.You can read some of the standards hereand here in pdf format and you can visit UB’s Center for Inclusive Design and Environmental Access main pageto read more on what they are doing as well as NC State University’s Center for Universal Design.

These ideas of building homes isn’t just about the person with a disability, but about the family unit as a whole. if we build according to these guidelines, then elderly relatives can visit with ease, or if we reach that stage of life, we can stay in our homes and not worry about having to sell it and go into a nursing home because our own home is no longer safe/the cost of renovating is too high. And, god forbid, we acquire a debilitating illness, or suffer an injury if the home is built with universal design and visitablity in mind, that is one huge stress a family does not have to think about: how am (I, they) going to get around in the house? How much will it cost to renovate? It’s funny how we plan for retirement, for kids, but our homes are not built in a manner that is forward thinking in how we will change over time.

Lastly, I would be remiss in not referring you to the site of the woman (and now the group) that spear-headed this movement all the way back to the mid 80s Concrete Change.Eleanor Smith asked a simple question of “If every new bus can have a lift, then why can’t every new house have a zero step entrance?” The group has been making strides all over the world. What about legislation? The Inclusive Home Design Act was proposed but according to govtrack it never became law. I personally would like to see this expanded to requiring apartments with two or more stories to have an elevator. I’ve seen some inconsistencies, some buildings having them, while others do not.And this goes to, again, choice.What if the only available units are upstairs? I’m reminded of one of childhood friend’s old apartment in Canandaigua, if I recall correctly.Awesome wide doors and a bathroom I could easily get into, as well as a leveled entrance to the building.But his apartment was upstairs.We left at around 2am and were giggly and he fell on the stairs as he carried me down.I still feel guilty bout this.So, hopefully, one day, we can live in a society where everyone can come and go as they please, visit friends without hesitation or trepidation, nor worry that their friends may get hurt because they were helping to carry them up flights of stairs.Until then, I’ll relish the summer heat, and get outside as much as I can and enjoy the company of those I love so dearly until Old Man Winter ushers me inside once again.

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Kate McGowan is a former Rochester television news reporter now working in the non-profit sector for the nation’s leading children’s charity, Make-A-Wish. She is passionate about inspiring young professionals to use their talents in becoming more actively involved in their communities. Follow her on Twitter at @KateMcGowan

Toni Lynn Arena: I am a digital media specialist by day and a fitness loving, animal activist by night. When I'm not working on self-improvement inside and out, I work with other philanthropists to build awareness within the young professional community and help make a difference.

Andrea Raethka earned a bachelor's in History, Sociology and Women's Studies from the College of Brockport. She is a mother of three young children and is always up for exploring new places for kiddie play dates. She enjoys good food, local shopping and keeping up to date on news, politics and public school issues. Find Andrea on Twitter: @Mango1531.

Ashley Dewey is an internet marketing blogger from Victor who shares thoughts about life and pets.

Audrey Burns is a reader, writer and full-time nostalgist who writes about cultural and social issues in Rochester.

Cynthia Pacia shares thoughts about giving and living in the Rochester area.

Eastman Young Professionals share the latest happenings at George Eastman House.

Habitat for Humanity Young Professionals share life and non-profit experiences, and their journey within Rochester’s changing landscape.

Jason Schwingle is a native of Rochester. He shares his thoughts and ideas on bringing young professionals back to Rochester and to downtown.

Jenna Kempie is the Social Media Chair for the Rochester Young Professionals, and is contributing posts on RYP activities and other helpful insights for young professionals in the community. Jenna enjoys getting out and exploring the area, and talking to people about their Rochester experiences, print and technology - on and offline. Follow Jenna on Twitter: @JennaKempie

Jennifer Galvez Caton is an active arts volunteer who shares her passion and perspective on theater, film, dance and music with young professionals in the Rochester area.

Jerome Nathaniel is a 2011 graduate of the University of Rochester, where he was an executive editor for the Campus Times and a service fellow with the Gandhi Institute for Nonviolence. Now, the Brooklyn native has returned to Rochester as an Americorp Vista at Foodlink, where he's serving as a hunger advocate.

Kayleigh Nutting is a non-profit professional that came to Rochester for college and never left. She is a graduate student and works full time planning special events and fundraising. Follow her as she writes about kicking back, giving back and appreciating the Flower City.

Kristine Caronna, a young professional blogger from Greece, shares her thoughts and updates.

Leah Shearer is a young professional and two-time cancer survivor from Rochester. She shares her unique perspective on all things - the serious, the silly and everything in between.

Luticha Doucette is a student researcher, activist and humanist who sees the world from a seated position. She chronicles life as a disable person seeking a PhD. position in biophysics at Yale or John Hopkins universities, and beyond.

Maria Thomas is the chair of RocCity Coalition, who is passionate about education and the needs of city youth. She writes about various opportunities for young professionals to get involved in the community.

Olga Podzorov is an agent with Nothnagle Realtors. She is a community activist and passionate philanthropist who is committed to working with young professionals. She covers a variety of real estate issues.

Ruth Harper-Rhode, a St. Bonaventure University graduate, does public relations for a local nonprofit. She moved to Rochester from a small city in 2011 and lived on Park Ave before moving to Penfield, where she currently resides.

Terra Keller sends updates from the staff at Foodlink, a popular regional food bank.

Stefanie Schwingle is a Rochester native and has worked at Wegmans Corporation for the past 10 years, but her interests lie in entrepreneurship and communication and her passions include urban living, photography, and cooking. Stefanie lives downtown with her husband and loves everyday life in the city.

Taren Greenidge earned her B.A. in Economics and Political Science, cum laude, in 2007 from Spelman College and her J.D. from Duke University School of Law in 2010. She is an associate at Littler Mendelson, P.C, a U.S.-based international law firm exclusively devoted to representing management in every aspect of labor and employment law. Taren is the president of the Black Young Professionals of Rochester, an auxiliary of the Urban League of Rochester, N.Y., Inc., which targets individuals ages 21 through 40 to foster growth and professional development, to empower members to achieve success and to strive to improve the community.